I’ve been a ‘success story’ for a while but dropped off the perch a couple of weeks ago. I had one of those migraine ‘big bang’ trigger events. Some serious lady hormones coupled with a stressful event at DefCon level 10 and wham! Migraine came and made a home for itself in my brain, two weeks and counting. The most annoying symptom has been problems with my ears (mostly right side). Constant fullness, humming, muffled hearing and some pain. Balance also way off, to the point where yesterday I couldn’t stand, let alone walk straight and literally had to stagger to bed, for five hours. Add to that nausea, IBS, woeful brain fog and anxiety and it’s all starting to sound oh so familiar and horrible.
I’ve been to the GP and there’s nothing visibly wrong with my ears so it’s off to the neurologist I go. Miraculously he (Dr Halmagyi) has a cancellation tomorrow (usually it’s well over 6 weeks’ wait to see him). I pretty much know that he’ll want to put me back on Prothiaden, so I’ve already started. But I think it will be good to touch base with him anyway.
Today the hearing/ear symptoms seem to be easing and I now have the crushing hangover feeling. I think this is actually a good thing, as I suspect it means I may have broken the cycle and am coming out of it (I usually get the hangover after a stand alone migraine event).
This latest episode really has me thinking about long term management. Stress is such a big trigger, I’m wondering if it’s time to make some big life changes to get this stuff under control and also to try not to set it off again. I really resent losing big chunks of time out of my life like this.
Northern NSW near Mount warning and a “herb” garden. That will chill you out. :lol:
Sorry to hear you’re getting whacked again. Nothing some Jamie Oliver Italian can’t fix. Looking forward to blowing the froth off a mineral water with you and Mupp tomorrow night.
Northern NSW near Mount warning and a “herb” garden. That will chill you out. :lol:
Sorry to hear you’re getting whacked again. Nothing some Jamie Oliver Italian can’t fix. Looking forward to blowing the froth off a mineral water with you and Mupp tomorrow night.
S 8)
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Northern NSW - I spent three hours on domain.com last night looking at properties. If I could find legal work up there - I’d go! Oh for the quiet life and clean, fresh air and pristine beaches. Heavy sigh.
Yeah the menu rocks. What I like is that not every dish on the menu is drowning in onions and garlic like every other Italian joint in Sydney. There is actually variety going on.
They make the pasta there, right in your face. LOL
Vic, really sorry to hear you have relapsed. Hope the prothiaden soon sorts you out. Maybe once you are back in remission you could see about staying on a really small dose just to keep it at bay all the time rather than coming off it altogether?
But, hang on, hang on, hang on a mo…
Muppo is visiting you all the way from the UK. All the way to sunny Australia. Half way round the world and all that. Home of amazing seafood, BBQs, and many other fabulous Australian foodie things I can’t remember at this second in time due to mind-numbing effects of topamax. So you’re taking her to a Jamie Oliver restaurant. A British geezer, right?? Come on guys, what’s going on???
Hey Vic, sorry to hear you’re going through a bad patch - it’s a bummer isn’t it! I always think that next time it gets me I’ll be able to control the anxiety, but no - it’s a nightmare. You’d think the anxiety would lessen as we know whats coming!
Hope you feel better soon
x
Hey Victoria, you have been my inspiration for giving the prothiaden another go. The packet of dosulepin is at the side of me as we speak. Did you start on the whole 25mg capsule or did you break it into something smaller?
Been the same as you the last two weeks along with the same hearing stuff so have decided to bite the bullet. How long have you lasted off the prothiaden now? I guess without it, its all a case of how far we push the boundaries, in my case, way to far this last few weeks, just wanted “a life”
Sorry you’ve hid a bad patch Vic - hope the prothiaden sorts it out for you. Making major life re-evaluations can be hard - particularly trying to avoid stress when you have to work, manage relationships etc. Good luck with whatever you try, and let us know what Dr H says
So sorry to hear this Vic. Non-migraineurs just have no idea how lousy this feels - when your balance and ears and gut are all affected (oh yeah, and headache too), you just feel so miserable. I’m glad what we have isn’t fatal, but it still really sucks. Sure hope the hangover sign is indeed an indication that you’ve turned the corner.
Thanks for your support everyone. Honestly, trying to navigate this shit on my own would be rough - the information and support on here is just gold.
So, I saw Halmagyi again today. He reviewed my notes, discussed my current symptoms and did some of those balance tests with the goggles. He thinks as well as migraine I may have something going on with my inner ear, namely, Meniere’s disease. I told him in no uncertain terms I do NOT want that (especially on top of migraine). Heavy sigh. Anyway, he wants me back in on Friday all day to do the hearing and balance tests again followed by another consult with him. He apologised in advance for the caloric but I said, whatever, let’s just do what needs to be done.
Christine - I’ve been off Prothiaden for about nine months. I took about six months to get off it (was on 150mg). It really did work pretty well for me. I’ve started back on it (as of last Thursday) on 25mg. Depending on what Halmagyi says on Friday I’ll take it from there. Or not…?
So, I saw Halmagyi again today. He reviewed my notes, discussed my current symptoms and did some of those balance tests with the goggles. He thinks as well as migraine I may have something going on with my inner ear, namely, Meniere’s disease. I told him in no uncertain terms I do NOT want that (especially on top of migraine). Heavy sigh. Anyway, he wants me back in on Friday all day to do the hearing and balance tests again followed by another consult with him. He apologised in advance for the caloric but I said, whatever, let’s just do what needs to be done.
Vic
Sounds like you are getting the same diagnosis as me then. After all the ENT tests in my 20s diagnosed menieres. Later on, more tests, not enough hearing loss although there were some abnormalities with the balance tests, not menieres, basilar migraine. I was leaping between ENT and neurology, this was at Oxford. More tests, hole in the ear test (is that ECOG) memory is going, because of the pressure, menieres then changed to endolymphatic hydrops, went to Cambridge, no, not menieres, but inner ear lesion. Up to London, more ENT tests, one letter to the dr. said, calorics showed nothing, the other letter said showed abnormality, she finally thought it was migraine and I went to London to see Goadsby who said it was vestibular migraine. ENT wanted to repeat tests, I declined. To this day I am not sure, I think it may be both. Either way, prothiaden helped me some in the past and its helped you once too, so I think that is the way to go for me.
Sounds like you are getting the same diagnosis as me then. After all the ENT tests in my 20s diagnosed menieres. Later on, more tests, not enough hearing loss although there were some abnormalities with the balance tests, not menieres, basilar migraine. I was leaping between ENT and neurology, this was at Oxford. More tests, hole in the ear test (is that ECOG) memory is going, because of the pressure, menieres then changed to endolymphatic hydrops, went to Cambridge, no, not menieres, but inner ear lesion. Up to London, more ENT tests, one letter to the dr. said, calorics showed nothing, the other letter said showed abnormality, she finally thought it was migraine and I went to London to see Goadsby who said it was vestibular migraine. ENT wanted to repeat tests, I declined. To this day I am not sure, I think it may be both. Either way, prothiaden helped me some in the past and its helped you once too, so I think that is the way to go for me.
Christine
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Gawd, what a nightmarish run around you’ve had Christine! I guess I am lucky in that Halmagyi is THE guy for all these hearing/balance disorders in Australia so I think I’m in the best hands I can be. I’m staying on the Prothiaden until he tells me otherwise.
Will keep you all posted on what happens on Friday.
Good luck for Friday. Like you say, you just need to get all these tests out of the way to get a more certain diagnosis. It’s good that you are in the hands of such an expert in the field.
Be thinking of you on Friday. Take care.
Well - it’s good news. Looks like I don’t have Meniere’s. Hurrah!
I did all the hearing tests (including some new ones) and all the balance tests (delightful caloric included). The results haven’t changed much since I last had them done almost three years ago (so still a bit deaf).
The audiologist and the nurse were great - explained a lot of stuff and took really detailed notes. It was unfortunate that I wasn’t able to get my hearing tested while it was bad/acute however based on yesterday’s results I haven’t really got any ‘worse’. I’m still a migraineur of course but there doesn’t seem to be anything else sinister going on. There’s something sort of reassuring about having a bunch of experts tell you that they frequently see migraineurs who lose their hearing and fall over - SNAFU for us and them!
Great news. Hope you didnt find the calorics too bad. I was quite ill with it. So are you carrying on with the prothiaden again?
I am on the 4th day of a stinker, started with the half moon zig zag lines and yesterday had bad vertigo. I was going to start on the proth last night but in the middle of vertigo wanted to reach for stemetil. They have scared me with my stemetil now saying it shouldnt be taken with proth or amy, causes arrythmus or something. Mind you, I took it years ago with it, with no problems, they might just be being a bit cautious. Glad thats over for you, big relief
The first ear on the caloric was AWFUL. Spin, spin, spin. But the other three weren’t too bad.
Yes, am back on the Prothiaden, 25mg so far. I might stay at that for a bit and see how I go. You’ve been thinking about Prothiaden for a while now Christine, perhaps it’s time to give it a go? Scintillating scotoma/fortification spectra aka that half moon with the zig zaggy lines. Fark! I hate them! Yuck, yuck, yuck!
Forgot to mention that my hearing loss is high frequency rather than low, this apparantly assists in the ‘not Meniere’s’ diagnosis.
